Saturday, April 2, 2016

Chasing a Cure

In the 19 months and 7 days that I have been a T1D Momma, well meaning friends have shared articles about the newest study or trial for the BREAKTHOUGH CURE, the panacea that will eradicate Diabetes from our lives. And while I know that these posts come from a place of love and concern and caring, I am at best pessimistic, and at worse a little angry everytime I see them. 

You see, the FDA sees type 1 as managed, so it's never at the top of the heap of things to be approved. And, God knows I've learned, that just because there is a treatment, it doesn't mean it's covered by insurance, or accessed by anyone with a limited budget. My other kids need to eat too. When copays for life sustaining medications get doubled and the amount covered gets cut in half each year, the idea of THE CURE being something I can afford? Laughable. 

You see; being the parent of a diabetic is waking up every day and watching your child dart into traffic. Every. Day. Every meal, every hour they exercise, every cold, every stomach flu, every fucking breath, they are BASE jumping with a shitty tattered parachute. 

I can't hope. My capacity for hope has been exhausted by our daily living. It's not that I don't appreciate the intention behind the sharing, I do. I just can't even fathom what happened to my girl. I can't even comprehend that she walks around wearing life support. SHE WILL DIE WITHOUT THESE THINGS, THESE VERY EXPENSIVE AND IMPERFECT THINGS. Every day that I wake up I am one day farther from before, and I yearn for it more. Hope is a dangerous thing. When you dodge traffic every moment of every day.